The InSieMe Project:Developing the role of the

MS Nurse in Italy

R. Motta, RN

Social and Health Services and Research, Italian MS Society,

ITALY

InSieMe: Infermieri per la Sclerosi Multipla

Together: Nurses for Multiple

Sclerosis

Background

• Approximately 52,000 affected with MS• Socialized health system• Inadequate distribution of human

resources in hospitals and out-patient services (ie. patient:neurologist ratio - northern Italy 57:1 vs 34:1 in southern)

• No special training/education in MS for allied healthcare professionals

AIM:Create, develop, formalize role of MS nurse in Italy

GOALS: - Develop nurses specialized in MS- Standardize healthcare practices

in MS nursing- Mechanism for exchange and

professional growth- Peer support network

Phases of InSieMe:

- develop curriculum

- choose 1st 10 centres/nurses

- intensive, comprehensive training on MS

- regional courses

- national conference

- develop a permanente organization or group

Phase 1

Develop curriculum

Topics chosen based on: -IOMSN Core Curriculum-Canadian MS Care Plan-Focus groups of professionals and persons with MS

MODULES PROGRAM.

Day 1Overview of multiple sclerosisUnderstanding the basics of neurological examination and EDSSIdentifying and coordinating an interdisciplinary team

Day 2 Disease modifying agentsEvaluating materials provided by the pharmaceutical industry: Are they always useful?Complementary and alternative therapiesNutritionFatigue

Day 3 Urinary dysfunctionUsing the voiding diary for initial assessment of urinary dysfunction The role of self-catheterization for patients with MSBowel dysfunctionSexualityLearning to be comfortable talking about sexuality with patients

Day 4 Cognitive dysfunctionPsychosocial aspectsSpasticityTremorPain

Day 5 Employment issues, legislation and patient and caregiver rightsAids for activities of daily livingResources for the MS nurseResources for people with MS and their familiesDocumentation

Phase 2

Choose core group of 10 nurses

Questionnaire to 200 neurology department

● MS clinic exists?● Dedicated nurse?

● HoursCriteria: - dedicated nurse following MS pts.- MS clinic open > 3 days/week- geographical distribution

Course teaching methods

• Lecture• Question and answer• “Quiz the audience”• Small group tasks• Role-playing• Case studies and case presentations• Practice visits with patients• Demonstrations• Discussion

Phase 3

Training

- 5 day course on MS (with 10 nurses)

- 2 day/session for revising curriculum

- 3 day course for learning speaker skills

Phase 4

Regional course

- 10 courses offered in 10 sites- neurologist were invited to identify nurse to attend- 1 nurse for each neurology department in Italy- project covered all costs except for participants’ travel

Centres involved in InSieMe

                                             

18

5

25

5

10

8

1

11

48

16

13

143

8

92323

Key to success - 1

CHOOSE THE RIGHT PEOPLE!

- motivated- dedicated- energetic- organized- open to new experiences- open to challenges

Key to success - 2

- vary teaching methods- involve partecipants throughout course

Phase 5

National Conference

● 1st conference dedicated to nurses working in MS● Speakers are nurses!● Program does not exclude nurses who did not attend regional course● Opportunity for starting a support network

1st Annual MS Nurse Conference25-26 October, 2003

Bologna, Italy

● 240 registrants so far● Launch of new society for Italian MS Nurses

- registration fee includes 1 year membership in

new society

Conference programMS nurse: Defining a new role

Results of the InSieMe projectThe impact of InSieMe on MS patientsImproving quality in MS centresThe Cagliari MS Centre as a model

The role of the MS nurse in teaching autonomyThe meaning of autonomy in chronic illnessLegislation regarding patient rightsSelf-management of fatigueSexuality: let’s start talking about itConfronting bladder problems

The future of MS nurses in ItalyThe IOMSN experienceCreating and applying guidelines in MS

nursingA new dialogue between nurse and

neurologistLooking toward the future: SISM

Phase 6

SISM- Italian MS Nurse Society

● Founded by a group of MS nurses and Italian MS Society● Goals for 1st year:

- continuing education- guideline development- 2nd annual conference

● Official affiliate of IOMSN

In countries where no MS Nurse exists people (nurses, pwMS, other health care professionals) have to convinced of importance of MS Nurse:

- give materials that support and promote project to put in hospitals and MSS branches

- write a final exam that is reasonably challenging (with possibility for

failing)- give certificates:

▪ for completing course

▪ for passing exam- offer CE credits, if possible

Challenges

● cultural barriers

● cost

● time/personnel

Challenges

cultural barriers

- nurses themselves inflexible to change, unwilling to take on active role and more responsabilities - patients, families accustomed to “communicating” only with

neurologist- physician unwilling to acknowledge

a non-physician can be responsible

for management and decision-making

Challenges

cost (hotel and catering for regional courses and printed materials

very expensive)

- smaller-scale (start small)- use MS Society/hospital structures rather than hotels- promote project in materials already produced by MS Society (i.e. magazine, newsletter, etc.)

Challenges

time/personnel (we used 2 full-time people for 3 years)

- use a person with/in MS Society who is

able to organize the project and is knowledgable about MS- involve MS experts and others who

will collaborate for free

Conclusions

▪ where the MS nurse does not exist – MS Societies must act▪ creating MS Nurse experts is a long-term commitment▪ MS Nurse has the possibility to improve the quality of life for people with MS